Monday, January 7, 2008

A Wonderful Life

I didn't give Wonderbaby's future a lot of really reflective thought while I was pregnant with her. Which is to say, to the extent that I thought about it, I simply assumed that her future was brilliantly, gleamingly bright. I didn't know exactly what kind of person she would be, but I assumed that she would be, somehow, in some way, fabulous, and that, accordingly, her life would unfold fabulously before her.

What this really meant, I don't know. As I said, I didn't really give it a lot of thought. I suppose that I assumed that she would be tall and attractive and kind and funny, like her father, and smart and curious, like me. If I had any specific worries, these were along the lines of what if she doesn't turn out to be a book-lover? or, what if she has my nose? I didn't worry about the basic constituents of an ordinary life, beyond the usual maternal concerns about her natal and post-natal health and safety. If I could keep her safe, then she would almost certainly have a wonderful life, right? Whatever that meant.

When we learned that this baby, this Sprout, Wonderbaby's babybrudda, might very well face substantial obstacles to an ordinary life, that his health and well-being - that his prospects for a quote-unquote normal, never extraordinary or brilliant, future - were threatened at the very outset of his life, we were forced to examine exactly what it meant to speak of a wonderful life. I was forced to examine it. What would it mean, for my understanding of a wonderful life for my child, if it might not include all the hallmarks of normalcy, let alone brilliance, conventionally understood? What would it mean if this child were different - different in the most difficult, challenging ways? What would it mean for him, and what would it mean for me? What would I dream for this child, if I could not dream my own dreams, or variations thereof, on his behalf?

Therein lay the problem. I have only ever entertained - consciously or otherwise - dreams, for my children, that are variations on my own, most dearly held and largely unquestioned dreams. Dreams of more or less conventional happiness. Dreams about pursuing dreams and fulfilling ambitions. The specifics haven't really mattered - love men or women, study the works of Plato or Stan Lee, explore sea or sky or invent things or make movies or climb mountains or write books, whatever - but the scale has always been consistent. These have been big dreams. Extraordinary dreams. Dreams for an extraordinary life, a big life. Dreams that had to be - or so I thought - scaled back, dramatically scaled back, for a child whose future might very well be severely limited in scope or scale. Limited, perhaps, to the barest extremes. I had to ask myself, what could I dream for this child? And more to the point, could I be happy, really happy, for this child, regardless of what dreams, what ambitions, what hopes - however modest, however limited - would surround his life?

Of course I could. Our children are the very definition of happiness for us, regardless of the obstacles/challenges/limitations they face. We dream for them, no matter what. We all know this. But what I learned from this brush with the more complicated variations of hope, what I really learned from this, was that I not only know this, I believe this. I really do believe - feel right down to the marrow of my bones - that any child of mine will have a wonderful life - no matter what challenges that life brings, no matter how short or difficult that life - because I will (and do) love him, and love him well. He will be surrounded by love, and that really, really is all that matters. Not whether he is smart or fast or agile or especially talented with language. Just that he is loved. Trite, maybe, but true, really, truly true. Know-it-in-my-bones true.

We know, now, that the specific limitations that we were worried need no longer be worried about. But the lesson holds. We will, I will, let this child shape his own dreams. We will let his happiness be defined by loved. Everything else will be gravy.

That said, it'll help if he is fast, at least - he'll need to be if he's to keep himself out from under his sister's (benevolently) tyrannical control. And I certainly wouldn't mind if he preferred books to stinkbombs. But end of the day, nothing - nothing - really matters except the love, for his - our - wonderful life. It really, really doesn't.

52 Comments:

My second child has some (minor in the grand scheme of things but still significant) challenges that make her life, and ours, more difficult. This is a lesson I learn and relearn every day as I do my best to give her the tools she needs to have the very best life she can, even if it's not quite the one we envisioned for her.

I really identify with this post, C. It's like you took the thoughts right out of my head. We're currently struggling with some similar issues--to have the test or not? what if the test shows A or B, what does this mean?--and to read this post is like reading the future. Sprout will--and already has--a wonderful life: a wonderful Mama, Dada, and Big Sis to teach him all the world has to offer. How lucky can one boy be?

I'm completely choked up over here.I've written about this before, but before I had children, I felt entitled to brilliant, gifted children: the universe OWED me this. My first child, of course, was a complicated human being with her own challenges and now I just feel a humble gratitude for the very children that I have. SO this post really hit home with me.

I think as parents it is natural that our dreams somehow become - initially - the dreams we wish upon our children. As they grow and become their own people it is much easier to see their dreams for themselves, they open up to us.

Your little guy is lucky already to have such a wonderful family waiting for him. As the mother of two girls I think I would much prefer the books and dollies to stick bombs, but you know I could probably learn to love them to.

That was a beautiful post. I too, had a girl and then a boy. Girlie is 4 and the boy just turned 1...he has been fast, since the moment of birth, racing to catch up with the sister that he adores. She can go from his tyrannical dictator to gently mothering saviour in a heartbeat. Several times a day. Enjoy the time you have left with just WB, because although you have wonderful, magical moments ahead with two, life really will never be the same.

Having a kiddo with some challenges, who isn't quite normal, definitely teaches you that the future is a blank slate that really doesn't matter in this moment. All that matters is happiness and love and you stop swelling on the what-ifs of it all. You expressed that well here.

You describe the process that a lot of parents have to go through. I had to face this when we were told about Evan's heart defect and later on the effects of his stroke. Admittedly he will probably have a pretty normal life, but there will be a lot of challenges ahead of him especially if he does not regain significant use of his left hand. Simple things that I took for granted like playing the the school band will be possibly out of the question. He is already banned from doing a lot of different sports because he is on blood thinners. He may not care about that now but I am sure he will when he sees his friends doing that. Any way,great post!

For me, when I was pregnant with my first, I had the same thoughts.This time I have many more fears. I'm not sure they are the same as yours, but from day one, even when we were thinking about getting pregnant, my mindset was different.Like you I had a few scares (different though) and maybe that plays into it, but although I hope equally for this child as I did my son, my hopes have a lot more fear involved.Maybe it's just reality after having a child. I don't know. But, I really understood what you were saying here.

Well said. I remember not thinking about the future of teh baby, just praying everything would be alright. We had some scares and complications during the pregnancy or our little girls and it sure puts things into perspective

I get the gest of what you are saying. You will love him no matter what, and he can choose his own dreams and that's what we call a wonderful life.

BUT...don't hate me, I would like to present another picture, not for your baby (he will be just fine) but for those who were born with a disability.

On Sat afternoon I went shopping and ended up eating a burger near the Eaton Centre. A family walked in with their son (30 yr old?) in a wheelchair. They loved him and must have taken good care of him all his life. It showed that they cared. But he looked at everyone with envy. He didn't look happy. I bet there are times that he asks himself how come he can't have a girlfriend like others? How come he can't go shopping or eat a burger by himself? How come like every other 30yr old he can't live by himself? Ho come he can't dream like everyone else?

Did I read in his eyes signs of a "wonderful life"? I don't think I did. I read "envy" and "challenge". And I felt ashamed of my own easy life

Sometimes love is not enough. Sometimes not being able to reach full potential is painful, evey day. Not being like everyone else, is difficult.

I have refrained from commenting because I had too much to say. But I am so very happy for you...I think that we fear the loss of a dream more than we actually can fear the reality that we are dealt.because really? you will rise to the occasion no matter what.you are blessed with good news.

you are a beautiful human being. truly. in every fiber that makes up who you are- it's genuinely beautiful, loving, and strong. i want to commend you for contuining on with this pregnancy and choosing to bring a special needs child into the world because anyone who has had personal contact with a child as wonderful as one of these children, knows how much they can teach us.. how much we can learn from them- i want to commend you, but i know you don't want to be commended. you are a loving family, who will soon have another loving human being to just add to your life. it will be hard, but it will be worth it. i love you. but this kid- he is so lucky to have this family. i firmly believe that before we're born, we choose who we are going to be born to (i know y'all think i'm a freak. lol). we choose our parents for specific reasons. he chose you and your husband. how lucky for you both. how lucky for him.

All I have to add is this:If one of them decides not to go to college, or get married, or have kids, or decides to live a life you would normally consider 'sad' or 'unsuccessful'... Remember this post.

I wish my mom had let go of her 'dreams' for me sooner - I had to effectually shatter them in order to live my own life.

City Gal - you're right: life for a person with disabilities, especially severe ones, isn't sunshine and roses, no matter how much they're loved. But that they're loved, and they love, is more important than whether or not they ever get to ski or climb Everest or become a movie star. The thing that I realized, deeply, was that the love mattered far more than the scope of the dreams.

Sweet Jennster - it looks as though our boy will likely *not* be special needs, at least not on the axis that we were worried about. it really looked that way for a while - hence the reflections here - but the amnio was negative for down's syndrome. It's not a golden ticket - there're no guarantees on what kind of hand he'll be dealt - but at least we've been able to put that worry to rest.

That's a beautiful post, and I second the sentiments (or in this case 35th the sentiments?). My husband is (was?) like you in dreaming big for our girls, while I am content to see that they get love and care and are kept safe -- as safe as I can make them, for now, anyway.

The beauty and wisdom of this post exceeds anything even YOU - the great writer of blogness, have ever done. Of course you're right - the life of a child and the adult he grows into is determined by how well his parents allow him/her to (as a friend once described it)unfurl -- to allow all that is best in each child to emerge and grow -- and you would certainly be gifted at doing that for any new person on this earth. Maybe it's the philosopher in you but you have described all that so well. I suspected you had gotten good news because of a vague post on another blog but am so so so happy to see it confirmed here. Any child who shows up in your family is blessed - as are those of us with whom you share you thoughts and beautiful words. Happy New Year Catherine!

We have autism challenges here - he's the best little guy ever! Be amazed at all of the joy your child will bring to you - diagnosis or no diagnosis. If love is there, everything else will fall into place. :)

It is a lot to think about... and it does change things. A friend of mine just had his first child and I keeping thinking how good a job he'll do since he has this precious and inate orientation for human rights. Parenting is really about human rights and not about all the status that Fisher Price and Barbie try to make it about for us nowadays.

When the thought of a child circulated as an abstract concept, there emerged countless projections. Which mother has not imprinted upon her child her very own unfulfilled dreams and aspirations, whatever they be? As a tabula rasa, it can be mesmerizing, and personally vindicating: Where our foibles and flaws marred much, this pristine, new being can offer vindication, exemplifying a courage and strength under fire where we might have fumbled, navigating treacherous paths with greater self-confidence and assurance than we might have shown. Our griefs will not theirs, our struggles foreign, and our unrealized visions their lived experiences.

But then there is reality, beyond dreams, and the particulars of life will shape and limit their lives. Sometimes I believe that the best we can hope for is wonderous moments, a desire that when faced with the moral ambiguities of their lives they will do the right thing, that they navigate the perils of the world with some degree of dexterity, optimism and promise.

As their mother, I know I will suffer countless little deaths, the slings and arrows of fortunes beyond any control, but ultimately, I wish they lay me to rest with all the gratitude and sadness love entails.

Isn't the love the best we can do for our children? Isn't it all they really expect? It's true, I dream for my daughter and yet unborn son. But I decided that I would never push either of them to be better than the rest. Only to endeavor to the pinacle of their abilities. It's all I can expect after all. And it's what I would guide a disabled child to do too. If that brings my children to Everest's peak or to a brightly lit stage, it'll be their doing and they will have the confidence of knowing that they realized their own dreams themselves. Regardless of how big or small anyone else thinks those dreams are.

why do i suck so badly?!?! WHY?!? LOL... well then YAY! that's great news. it's all great though- every bit of it (except my apparent reading and comprehension skills). i still love you and still adore you.

oh catherine beautful post...and am glad that sprout is alright....we all as mums have great and grand dreams for our offspring...they are all that we could never achieve...and also a wonderful reflection of us....LAVANDULA